Tools Measuring Health Literacy in Critically Ill Patients and Their Caregivers: A Scoping Review.

Abstract

Objectives: Health literacy, the ability to understand and use health information, is important for critically ill patients and their caregivers in the neonatal ICU (NICU), PICU, and adult ICU to make informed decisions and navigate complex care. This review aimed to identify and summarize tools used to assess health literacy in critically ill patients or their caregivers.

Data sources: We searched MEDLINE, Embase, CINAHL, and PsycINFO through July 24, 2025.

Study selection: Included articles reported on tools to assess health literacy in critically ill patients or their caregivers. Two reviewers independently performed screening and data extraction.

Data extraction: Two independent reviewers extracted data in Covidence. Data items included study characteristics (country in which the study was conducted, study funding, study setting) and health literacy tool characteristics (tool user, types of questions in the tool, method of tool administration, if the tool was created by the study team, and if a full version was available in the publication).

Data synthesis: We included 92 articles describing 84 health literacy tools. Tools measured: 1) topic-specific clinical knowledge (e.g., organ donation, cardiopulmonary resuscitation; n = 24/84, 29%; NICU: n = 9; PICU: n = 1; ICU: n = 14); 2) ICU prognosis, diagnosis, and treatment (n = 23/84, 27%; NICU: 6; PICU: 3; ICU: n = 15); 3) neonatal and parenting (n = 13/84, 15%; all NICU); 4) general health literacy abilities (n = 11/84, 13%; NICU: n = 6; PICU: n = 2; ICU: n = 7); 5) information needs (n = 4/84, 5%; NICU: n = 1; PICU: n = 0; ICU: n = 3); 6) readiness for discharge (n = 3/84, 4%; all NICU); 7) decision-making (n = 3/84, 4%; all NICU); 8) health-related behaviors (n = 2/84, 2%; NICU: n = 1; ICU: n = 1); and 9) research participation (n = 1/84, 1%; NICU).

Conclusions: Although several health literacy tools exist, they often focus on individual knowledge of specific aspects of ICU care, with less attention to how understanding is produced within the clinical context through interactions among patients, caregivers, and healthcare providers. This may limit their ability to reflect how health literacy functions in critical illness. Assessment of health literacy requires pairing the appropriate tools with interaction-focused approaches to guide communication and support informed decision-making in ICU settings.